My Quality Of Life
The quality of my life is very important. I have had a progressive physical condition since the 1970s but I am determined not to give in to it. I akways try to have a smile on my face. People prefer to see a happy person. Put it differently my glass is half full and NOT half empty
People say I am an optimist and never say die. Well that attitude has been a tremendous help to me.
Using a wheelchair, do I need L-plates
Using a wheelchair sounds really easy. Self propelling wheelchairs have much bigger rear wheels which have push-rims fitted to them. Now I can move the chair myself and be independent. Well, that all sounds super easy. Mind you there are problems being a wheelchair user that had not crossed my mind until I started to use […]
Do you know I have smouldering MS
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made […]
Feet are made for standing
Feet are made for standing, its something people take for granted. OK I admit that walking, running and jumping also involve feet but standing on them is a basic function. “Learn to stand on your own two feet” and “Rushed off your feet” are two common phrases that involve being on your feet. My mobility […]
Do we really need a car in London?
Do we really need a car now we are living in London? Our car is a 14 year old 2 litre diesel VW Passat estate, far too big for us in London. Its not ULEZ compliant (Ultra Low Emission Zone), much too old. Its starting to cost more every time it has an MOT. Also […]
My life with MS and invisible disabilities
My life with MS is turning into a balancing act. Not the high-wire type of balance, just making sure I don’t do two things simultaneously. My life is now just one job at a time, no more walking and talking. Invisible disabilities rule plus they control my life. Nobody knows I have invisible disabilities unless […]
I forget what I was going to tell you
I’ve had too many ideas on blogs to write over the last few months. Some frustrations, some positive experiences and even some actual thoughts. But when I start to write a blog there is a crisis that needs my full attention then I forget what I was going to tell you. I’m ten Recently this […]
Understand MS fatigue, logic can fly out of the window
For many people fatigue is an unenviable part of multiple sclerosis, its severity varies from person to person. People do not truly understand MS fatigue unless they suffer from it. The cause of this hidden disability is not properly understood. Worse still, too many people do not appreciate that fatigue is a chronic hidden disability. […]
Medical retirement sounds relaxing until it happens
Imagine I’m 10 years younger, a mere 56 but still with advanced MS. Faced with the prospect of returning to the office or still working from home then the idea of early retirement is exciting. The children have flown the nest and grandchildren are imminent. Would a city break in Europe suit me and The […]
I have a radio show
I have a radio show with Tring radio every week. We, me and Jessie, present a magazine show, just chat and music. This Thursday 3rd June will be my 10th show live on air. I have always wanted be on the radio but never admitted that to myself. The organisers, Tim and Rachel together with […]
2021 MS Awareness Week or living with my multiple sclerosis
It’s the annual chance to make people more aware of the problems of living with multiple sclerosis. Yup, its the MS Awareness week. Multiple sclerosis is different for everyone, The handicaps, niggles and disabilities all gang up and form your own personalised version of MS. I have my own unique selection, but hey-ho things could […]
My positive attitude despite MS disability
Isn’t it great when a positive event happens, I love it. The wretched pandemic has imposed so many restrictions on everyone’s life, mine has been no exception. It’s not always easy to see when there is an opportunity that is exciting and fun. I always try to have a positive attitude despite MS disability. Gardening […]
Blogger’s block or possibly bored with lock down
20-June 2020 It’s been over 3 months since we were all catapulted onto a different planet. My day-to-day existence rules change every day. You as well? Subtle changes every day. Surely me, a person disabled by multiple sclerosis, should have no problem finding topics to write on and post them on my website. Nope its […]
Busy doing nothing, I want some variation
5 May 2020. So here we are, over six weeks into the lock down. Forty-two times one day has morphed into the next. The only variation is the weather. I am busy doing nothing. I have a garden, I can see trees and everyone is friendly so I am lucky. Sadly I am not keeping myself […]
Enjoying our garden during the lock-down
24 April 2020 Well, isn’t the weather glorious, but it looks like some rain is due any day. I’m enjoying our garden during the lock-down. In this time of chaos l am able to quietly watch it evolve. More by good luck than design there is always at least one plant flowering in the garden […]
Further handicaps because of MS
I have a problem with expecting too much from myself. This in turn hurts me more than it helps me. I am always looking at my life and trying to simplify everything I do but it is harder than it seems. The biggest problem with advanced MS is how an ordinary activity is suddenly […]
Disabled and can’t walk unaided, welcome to my world
The pernicious creature multiple sclerosis affects me more and more as time goes by. I do have two legs but one of them is virtually useless. My brain cannot send messages to all the muscles in my left leg. Also, my left leg does not tell my brain everything that it has done. Messages cannot […]
My last ten years with multiple sclerosis
In the last last ten years I have changed from a man in full-time employment to a man with very visible, full-on, multiple sclerosis. Until 2011 my multiple sclerosis was affecting me physically but my thinking and problem-solving skills were still good. Employment was always somewhere in Europe as a contract computer analyst programmer or […]
Multiple sclerosis and the double whammy
Multiple sclerosis has taken over my life very very slowly. That sounds so much better than ruining my life very very slowly. It all started in 1972 and remained in the shadows for thirty years. The disease is now grown up, it’s matured into SPMS. For every disability there is a consequence. I call this […]
I can now see light at the end of the tunnel
Someone told me my last couple of blogs were not optimistic, Guilty as charged. In my defence I say that advanced multiple sclerosis is a gritty disabling disease. It is always there, in your face and in your head. There is no escape from it. The good news is that in my head I can […]
I’m full of good intentions
I remember the happy blue sky of summer, do you? Now a large black cloud fills my sky. Where are those happy days? I’m full of good intentions but there is always an excuse. The black cloud will soon blow away. Multiple sclerosis is to blame for the black cloud. Now I have no motivation […]
Hottest day of the year
It was the day that people with Multiple Sclerosis dread, total wipe-out by heat on Thursday25 June, the hottest day of the year. All motivation left my body as if by magic and my energy reserves evaporated. I felt as if I was walking through treacle. Life on that super-hot day was an endurance test. […]
Methods I use to manage my multiple sclerosis
Multiple sclerosis is a very unpredictable disease and tough to live with. I think we all know that; I certainly do. MS has now been a part of my life since 1972 but I was not diagnosed until 1995. Here some methods I use to manage my advanced multiple sclerosis. Everyone has their own way […]
Medical retirement 75 months ago
I took medical retirement in January 2012. That makes it sound like a voluntary decision so let me reword that. Medical retirement grabbed me 75 months ago in January 2012. For me there was no option. 🙁 A permanent holiday It sounds absolutely idyllic. I did not realise what an earth shattering process this was […]
Invisible disabilities are the hardest
Multiple sclerosis comes in all sorts of packages. There is no ‘one size fits all’. When I read the newspaper I look very healthy. As soon as I stand up everyone can see I’m seriously disabled. This is the flip side of MS, the invisible disabilities are the hardest to understand. Few would realise the […]
Multiple sclerosis is a vile disease
MS smothers you, wraps you up in its tentacles and replaces energy with fatigue. I can no longer do things that other people take completely for granted. Even worse there is nothing predictable about it except it just gets worse and worse and worse. It can even lurk in the body for years before its […]
Making an annual wish to improve my life
Back in the day I would make a resolution every New Year’s eve. Its such an easy thing to say when I’ve drunk a glass a glass or two too many. Everyone else has made one so why shouldn’t I? Now I’m a bit softer in the stomach and wiser in the head so I’ve […]
Three vignettes from the last few days
A change to the usual post; three vignettes from the last few days. August was supposed to be a quiet month but there has been something happening nearly every day. Summer is now over and the days are getting noticeably shorter. The ‘to do’ list was supposed to shrink, instead it has grown. Looking ahead Next […]
I have discovered sitting-down gardening
Another change because of MS. Time to discover a different way to garden. Now it is now ‘plastic-lined’ boxes type of gardening. No more digging holes with a spade or bending over to pull up weeds. I have discovered sitting-down gardening. Perhaps it found me, who knows? Childhood My father introduced me to gardening when […]
A progressive disease is one that gets worse
A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]
Aid4Disabled is nominated as an MS blog
I’m wary of emails from people or organisations that I have never heard of. I receive an enormous amount of spam email. Its when they begin “Hi Aid4Disabled”, I look no further and press the delete key. Imagine my surprise when an email told me “Aid4Disabled is nominated as an MS blog”. How did it […]
MS for over 70 percent of my life
I am 63, born in 1954. I have lived with Multiple Sclerosis for 45 years, that’s a scary thought. It started in 1972 but I was not diagnosed until 1995. It morphed to secondary progressive or advanced MS in about 2000. I took medical retirement in 2012. I have had MS for over 70 percent of […]
Does my disability make me worth less?
So Christmas is done and dusted for another year. Decorations have been taken down and put in the loft. The Boy Scouts have collected the tree and recycled it. We’ve even managed to empty the fridge. Now wouldn’t it be lovely if I could just pack up my MS and store that in the loft […]
Disabled access is not a tick box exercise
Access and facilities for physically disabled people are needed today and why ever not? It would be so unreasonable in this day and age to exclude the physically disabled from our activities. From my experience disabled access is turning into a tick box exercise. Remember disabled access is not a tick box exercise. Disabled access […]
Think about the positives
Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy quite simply I am clobbered by the heat. The energy just drains out of my body and worse if its humid as well. Two hot days and already I’m apprehensive of the summer. I must remember to […]
Another milestone in the inevitable progression of my MS
Something has definitely changed in the last few weeks. It was not an ‘Oh my God’ moment as in a flash of inspiration. Instead it was an ‘Oh my God’ realisation and it took a few weeks for me to understand. Let’s call it another milestone in the inevitable progression of my MS. Life moves […]
Heads MS Wins or Tails I Lose
Heads MS wins or tails I lose. Its all on the toss of a coin? Life is unfair. Running, driving, dog walking, employment are just a few things my friend MS has won from me. It is exerting such a strong grip on my life. Nowadays I run out of energy more quickly than ever 🙁 […]
